There was one fear
regarding therapy still nagging at me, pinching me in the middle of the night
and keeping me from sleeping. It kept creeping around the house like a dark
spectre: it lurked in corners.
This fear resulted from the fact that I knew
John’s personality so very well. I knew that John had always been a person who
thrived on instant gratification about anything that did not involve music. With the
music skills of performing or composing, John was more focused than any human I
knew. With everything else, like a typical artistic personality, John was truly
uninterested. He lived for music only. All other aspects of life either
resolved themselves instantly or he allowed them to slip aside and he simply refused
to participate. His beautiful musical personality had its own catch-22: he knew the benefits of practice
and work, but since therapy was outside his work ethic with his music, I feared
he would lose interest.
As we embarked on the therapy
train, starting slowly and gradually building skills, I knew that once John’s
brain healed more, his true personality would return. Initially, his
personality was shrouded in the haze of severe aphasia. With trepidation, I
felt that as he healed and the shroud slipped away, he would lose interest in
working on therapy. This was the dark spectre of fear that lived in me. I knew
that the window of time we had to make great progress before his attitude shift
occurred was precious.
This fear motivated me to
become Super Caregiver. I wanted to polish that window of time until it
sparkled. My dogged insistence on all-the-therapy-we-could-squeeze-into-every-minute-of-every-day
became fanatical. There was not a moment to waste.
Then one day, at about two
and a half years into the intense PT and OT, my fear became reality. John informed
me he truly believed that he would wake up one morning and he would be able to
walk again, and his right arm would function normally. He thought he did not
have to “do” anything to make this happen. He came up with this concept on his own. It became his excuse to sit down and wait for his magical healing to occur.
This was particularly apparent at one of his early morning PT sessions. He would spend an hour with his therapist using a normal walking gait that he had learned with this therapist. He actually had the ability to walk completely normally. As soon as the therapist said "our time is up for the day", John reverted back to the dragging gait that he had learned from the poor quality of therapy in the SNF. He did this because it felt "normal" - because he had learned this first. I was horrified! He was refusing to apply what he learned in therapy to his normal activities.
We had run up against the wall of no
return regarding his cooperation with the therapy. My fear became reality.
From this point forward, I knew I would have to
drag him to the therapy sessions so I made a hard decision. I decided to stop paying for physical therapy three times a week. I stopped scheduling that 7:15 a.m. appointment thirty miles away. I stopped being the chauffeur for that event. My time and the money was best spent in other directions.
I was heartbroken.
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